The Diagnosis-Thoughts on raising a child with a disability

Yesterday we had a daughter we knew had major developmental delays, today we have a daughter with an Intellectual Disability.

The last few days have been big days for us in the Donnessey household. Our oldest daughter turned six, graduated kindergarten, we discovered she was about to loose her first tooth, and she was diagnosed with an Intellectual Disability.

After a clear brain scan two months ago, we were feeling hopeful. We are still awaiting an appointment with a Neurological Pediatrician in the fall, but we are coming to terms with the fact that the professionals may never find a big answer as to why our daughter has these struggles. It’s very emotionally draining fighting and advocating for your child, pushing to get her to the top of wait lists, demanding support from the health care system, and ultimately seeking those big answers.

As parents searching for answers for close to 5 years as to why our daughter didn’t walk until almost 2, speak three word sentences until almost 4, was a late potty trainer, and couldn’t do “normal” things like kids her age could like cut with scissors or ride a bike we may never get the single reason as to why this is.

I’m not writing this post for sympathy or attention. I don’t want to hear a bunch of I’m sorry’s, or maybe she will still outgrow it. I’m writing this so our friends and families can read it and have a better understanding. I’m writing this for the mom’s, the dad’s, and the caregivers that are raising kids with disabilities to let them know they are not alone. Whether your just starting your journey into a child having a speech delay, why they are not crawling or walking yet, why they cant get the Cherrios in the water bottle like the developmental questionnaire paperwork from the health centre is asking them to.

Some days are great. We can make it through the day without a meltdown due to Sienna feeling frustrated. Other days she’s banging her head on the floor in anger because she can’t get the dress on her baby doll. Parenting is hard, but she teaches us how to be patient, how to turn a frustrating moment into a teaching opportunity, and how to practice self control.

A few things I know for sure is that we will always continue to advocate for our daughter. We will be her voice when she doesn’t have the words. We will support her and surround her with love and help her continuously learn and grow. She may never reach the level that her peers are on, but we do know she CAN learn and for that we are thankful.

We do our best and always will. That doesn’t mean we don’t loose our cool, or don’t let our kid watch too much YouTube when we have to get things done. We are not perfect, but we are doing the best we can.

If you know someone dealing with raising a child with disabilities I urge you to reach out to them. Let them know your there if they need to talk or vent. Be there for them without judgement or big opinions on what they need to do. Unless your going through this yourself, you have no idea how hard it is for them so don’t act as if you do. Offer to get your kids together for a play date, go for self care together like coffee or a pedicure, but most of all let them know your there if you need them. It’s been really helpful for me to talk with other mom’s going through similar situations (thanks Cassidy & Vicky) so reach out to other parents or groups that can relate.

The Children with Speech Delay group has been helpful for me. Even if I’m not actively posting there, I’m usually reading and relating. Find the group on Facebook here.

Thanks for reading and please know we appreciate those of you that are always there for us ❤

6 Replies to “The Diagnosis-Thoughts on raising a child with a disability ”

Thanks for sharing I’m sure there are thousands that need to read this and hope it helps them. As a parent and grandparent it is so painful to know you can’t do much for your daughter or granddaughter or grandson, except love them, accept them as they are. It would be nice to take it all away but, I congratulate all the loving parents out there for doing everything they can for their children . God bless and keep you safe and strong.

Teresa… So much of what you wrote resonates with me. I’m the father of a son with a serious developmental delay and I can relate to the frustration of dealing with the medical system and the search for the cause. We finally got a diagnosis a year and a half ago when Bryson was 9. He’s 11 now and.a real cutie just like your daughter! Thanks for sharing this.

It’s wonderful that you’re sharing this. I have a close friend with two children; one who is 16 but developmentally about two-years-old. The other, a healthy 17-year-old with severe OCD. Her plate is full, but so is her heart thanks to these two ‘different’ but equally wonderful children.